Thursday, November 19, 2015

This Is My Voice About Being Handicapped

I wrote an article about my thoughts and feelings on having cerebral palsy back in August 2011. It was about what life might be like if I did not have cerebral palsy, and if I would want that life. Being honest with myself, I always think about what if my parents had three normal daughters. Would I be the same person I am today? Probably not. I don't know what my life would be like and I don't want to think that way. I have a good life and I'm so grateful for my family and friends. On the other hand when I see someone in a wheelchair who has no idea what is going on, I don't want that for me. I hope my family would make the right choice for them and my sisters to let me go because I would have no quality of life.

But right now in my life I feel like my disability is helping me to accomplish what I want. I know it might sound crazy that I feel like my disability is an asset to me. But it's true, it's part of my identity. With this condition I live a more powerful story that I can share with others. I hope my story can help others to overcome obstacles in their own life. My own struggle has made me a more compassionate person. But don't pity me! I have done a lot, I'm an accomplished person in my life. I wrote a book about living with cerebral palsy, I went on a 36 day cruise with my best friend, I jumped off the Sky Tower in Auckland NZ.

But it's not all rainbows and daisies, there are definitely some drawbacks to being disabled... When I go out with family or friends, people treat me like a baby. I don't like that because I am a grown woman. They only see my physical disability and they think that I have no idea what's going on. Often times people won't ask me what I want, they ask whoever is with me instead. It kind of sucks having a disability. Some things are hard for me, and it takes me a little bit longer to get stuff done. When someone tells me NO, I don't even understand the word. When something comes my way, I always push through. Or when I talk to people I have to say it over and over because I'm difficult to understand. Relationships have always been difficult for me, even within my own family. I feel like my nieces and nephew don't really want someone like me for an Aunty. It's not their fault and I know they love me for me and I love them too, but it's definitely a different dynamic.

This is who I am, I am on a path on my own. I want to help people understand who I am and what I want out of life. This is also greater than me, the little girl inside of me is finally taking her footsteps to walking. I am not alone, I have tribe of people behind me.

Thursday, November 12, 2015

Update: On the Weekly Videos

I am sure many of you have been following along on this path that I'm taking, I have enjoyed sharing the journey with you. I am doing it for myself, the disabled community, and for people left less abled due to tragic life events. Ultimately, I want to bring some hope to people. So I decided to make a video about my progress to show you guys and everyone else what I am capable of doing. I can do everything with Cerebral Palsy! But I'm not putting up a video every week anymore, I am putting up a video every month. I want to show more of my big picture progress, rather than the little bits everyday. 

Thursday, November 5, 2015

On my Way to Walk Video 2

CTV News W5 Story:

There was a show on W5 a couple of weeks ago, it was on a family who has kids, triplets in fact and they all have cerebral palsy. The three kids have been through a lot. Brody is the most severely affected, he can't speak and has had multiple surgeries, including heart surgery at 6 weeks. His sister Taylor also had heart surgery at 6 weeks. His sister Taylor also had heart surgery at 6 weeks. Their brother Cole was born deaf however, since receiving a cochlear implant he is slowly starting to talk. Their parents have a hard time with everything in fact, the stress of this situation has caused them to divorce. They have had to make countless difficult decisions of what is best for the family. Often times the surgeries the kids go through are potentially fatal. They have to live life day by day and sometimes hour by hour.

My thoughts about this... I am thinking about the family because it's hard to have 3 little kids who all have cerebral palsy. When I think of my family, they have it so good because they only have one child with cerebral palsy. My heart goes out to the parents because they have kids who will never grow up and get a car, or go to college, or have kids of their own. If I was one of those kids, I would want my family to do the right thing for me and for them. I take my hat off to the parents of these triplets. They have sacrificed their own lives to care for their children. If I were in their shoes, I'd want to do the same. 

The important thing to realize is that cerebral palsy is a very individual condition, no two people are the same. No two families are the same either. What is right for one situation is not necessarily right for another. I think that in this family's situation it was in the parents best interest, despite all the sacrifices they made to do their best to raise those children. However, in the case of the family in the Dr. Phil story below, I believe it would be the best choice for those children with disabilities to have a doctor assisted suicide. They have no quality of life and no awareness where they are or who else is there. If I was in their shoes I would want my parents to let me go, and get on with their lives. I know they love me but if I was a vegetable then I would want them to let me go.